People with dementia might need to make the move into a care home for a number of reasons. Their needs might have increased as their dementia has progressed, or because of a crisis such as a hospital admission. It might be because the family or carer is no longer able to support the person. Whatever the reason, the move can be really difficult, practically and emotionally, for everyone involved.
It’s best to try and think ahead about if and when the transition to long-term care might be necessary. Usually the reason for considering a move is to ensure 24-hour supervision, or ensure an improved quality of life and social contact for someone who may have become isolated. Residential care is sometimes the only option, even if the person themselves does not agree.
Involve the person – but think about the carer
Planning the future move with the person themselves is vital.
There may be question marks about whether the person has the mental capacity to make a decision about the move, but their views should be included in the process of deciding.
Try to be positive about the move, and the benefits it may have for the person; give them as much choice as possible, and let them feel that they have some control.
This can be a very difficult (and often guilt-ridden) time for the carer and support from family, friends and professionals is very important. Many carers have devoted years to caring for the person and may need help in coping with ’losing’ them. They will need to find ways of continuing their caring role in partnership with the care home as well as developing other interests to occupy their time.
Finding the right home
Choosing the right residential care home can be daunting for families. It is possible to get a list of local care homes from Social Services or The Elderly Accommodation Counsel which helps people to make informed choices about their housing and care needs. It also runs a housing and care database that has over 40,000 care providers on it.
Age UK provides some great advice on what to look for when considering a care home. They have a detailed guide, which includes a check list of what you should think about when short listing and viewing care homes. Age UK has also produced a video which will provide you with some guidance.
The Residents and Relatives Association provides support and help regarding choosing and moving a relative into a care home and if you have concerns about a care home. They also have a helpline (020 7359 8136), which operates Monday to Friday from 9am to 4pm, and provides advice on what to look for when choosing a care home and how to pay for it. Age UK also has a fact sheet on how to pay for care.
This is a very personal thing. Call and arrange visits at the homes to get a feel for how they care for people and see for yourself whether your relative would be happy there. You could arrive earlier than your appointed time to observe the daily life of the home and get a true feel for it. Consider things like: do the staff make you feel welcome? Do they seem interested in your relative? Do they ask questions about their background and interests? Is there a garden or activities, such as music therapy, that your relative would enjoy?
Some care homes specialise in supporting people with dementia and will promote this on their website and marketing materials. However, when you visit a care home to see if it is suitable, whether it says it specialises in dementia or not, it is best to ask a few questions. Questions you ask may include: How many carers have had training in dementia care, at what level, and do they have certificates? Can you talk to a couple of the carers who have dementia care experience? Can you talk to other families who have a relative who has dementia in the care home to hear about their experience? By asking these questions and talking to people it should give you an indication of the care homes standards of dementia care.
Agreeing the right care home
Most care homes will visit your relative at home, or in hospital, or invite them to view the care home before agreeing that they can meet their needs. It is beneficial to make contact with the member of staff who does this, give them as much information and tips on your loved one with dementia as possible. This will help the staff at the care home to settle the relative into their new home. Share your relative’s life story as a tool of support for the staff. To learn more about ‘my life story’ read the blog post: ‘How to create a life story’.
If possible, aim to have the same member of staff available when the move actually takes place, providing a familiar and welcoming face. They can then share the tips of engagement with other staff.
On the day
On the day, the person may be reluctant or have forgotten the arrangement. Try to reduce their anxieties, and think in advance about anything that might cause conflict, so you can avoid it.
You could explain the move is a trial, and that a review will take place after a settling in period. Many families approach the issue of long-term care by arranging a short ‘respite’ stay in the home beforehand. If the care home do things right, it can sometimes only take a brief time to make the person feel safe and cared for in the new environment.
Make your relative’s/ friend’s room homely. Place pictures of their family and friends, and items like ornaments that they treasure around the room. If they have a favourite blanket or comforter make sure this is in their room as well. By making the room more like home it will help to sooth both you and them during this period of transition.
After arriving at the care home, it may be really hard to know when to leave. Discuss this with the staff, and get their co-operation if it looks like it might be upsetting; leaving while your relative is distracted with a meal or an activity will sometimes make it easier for everyone.
Support for you
Make sure that you get some support from family or friends after you have left and in the days, weeks and months that follow. Life will change for you if you are no longer caring full time. Find activities and clubs where you are able to meet old and new friends.
Be prepared to feel guilty! Many people say this happens for a while afterwards. Don’t hold onto these feelings, talk to family and friends.
Supporting the person following the move
This can be difficult and is different for everyone. Some care homes ask families not to visit for the first week or so to enable the person to settle in. Every person with dementia is different and will cope in different ways, with the move and the fundamental changes that have taken place.
This is the start of a partnership between the person who has dementia, the carer and family and the care home staff. Visiting frequently may be the best approach. Support the person to develop new relationships with other residents and join in activities. It is important for families to get to know staff as well. Families are vital in helping staff build a ‘Care Plan’ for the person and to give them guidance and advice on how to follow this through.
Concerns about the care that my loved one is receiving in a care home
If you have any concerns about the care of a person in the care home or the ability of staff to meet their needs, please speak to the manager in the first instance. State what the concerns are and what you would suggest could address these. If this does not resolve the issue or you are dissatisfied with the response, ask the manager for details of their line manager so you can express your concerns to them. In cases where there are still concerns or the situation is a safety risk, indicates neglect or poor standards of care you could then raise this with the Care Quality Commission (for services in England), Care Social Services Inspectorate Wales, Care Inspectorate (for services in Scotland) or Regulation Quality Improvement Authority (for services in Northern Ireland).
The Admiral Nurse Dementia Helpline is there to offer you support – from discussing whether to move your relative into a care home, through to offering you emotional support during this difficult time. The Helpline is a free service and is open Monday to Friday from 9am to 9pm, and from 9am to 5pm during the weekend. Call 0800 888 6678 or email firstname.lastname@example.org